Sharon Clark is able to obtain her cancer drug, Pomalyst – priced at over $ 18,000 for a 28-day supply – only through the generosity of patient aid foundations.
Clark, 57, a former insurance agent who lives in Bixby, Oklahoma, had to stop working in 2015 and go on Social Security and Medicare disability after being diagnosed with multiple myeloma, a cancer of the blood. Without the foundation’s grants, mostly funded by drug makers, she couldn’t afford the nearly $ 1,000 per month it would cost her for the drug, as her Medicare Part D drug plan required her. payable 5% of the current price.
Each year, however, Clark must find new grants to cover his expensive cancer drug.
“It is shameful that people have to scramble to find funding for medical care,” she said. “I am counting my blessings, for other patients have far worse stories than mine.”
Many Americans with cancer or other serious medical conditions face similar ordeals when it comes to prescription drugs. It is often worse, however, for Medicare patients. Unlike private health insurance, Part D drug plans do not cap the co-insurance costs of 5% of patients once they reach $ 6,350 in drug spending for the year (amount at $ 6,550 in 2021), except for very low-income beneficiaries.
President-elect Joe Biden supports a cap, and Democrats and Republicans in Congress have proposed annual limits ranging from $ 2,000 to $ 3,100. But there is disagreement on how to pay for this cost cap. The pharmaceutical companies and insurers, who support the concept, want someone else to bear the financial burden.
This forces patients to rely on financial aid programs. These arrangements, however, do nothing to reduce prices. In fact, they are helping drive up particularly high drug spending in America by encouraging doctors and patients to use the more expensive drugs when cheaper alternatives may be available.
Increasing expenditure on specialties, anticancer drugs
Nearly 70% of seniors want Congress to adopt an annual spending limit on drugs for Medicare beneficiaries, says one KFF survey Last year. (KHN is an editorially independent program of KFF.)
The affordability problem is compounded by soaring list prices for many specialty drugs used to treat cancer and other serious illnesses. The direct cost to Medicare and private insurance patients is often set as a percentage of the list price, as opposed to the lower rate negotiated by insurers.
For example, the prices of 54 oral cancer drugs soared 40% from 2010 to 2018, averaging $ 167,904 for one year of treatment, according to a 2019 JAMA study. Bristol Myers Squibb, the maker of Clark’s drug, Pomalyst, has increased the price by 75% since its approval in 2013, to about $ 237,000 per year. The company believes that “the price must be put in the context of the value or benefit that the drug brings to patients, to health systems and to society in general,” a Bristol spokesperson Myers Squibb said in a letter. electronic.
As a result of rising prices, 1 million of the 46.5 million Part D drug plan members are spending above the program’s catastrophic coverage threshold and face $ 3200 average annual personal expenditure, according to KFF. The blow is particularly heavy on cancer patients. Last year, the average cost of those in Part D for 11 oral cancer drugs was $ 10,470, according to JAMA study.
The median annual income of Medicare beneficiaries is $ 26,000.
Medicare patients face modest fees if their drugs are administered in a hospital or doctor’s office and if they have a Medigap or Medicare Advantage plan, which caps these expenses.
But in recent years dozens of effective drugs for cancer and other serious ailments have become available in oral form at the drugstore. This means that Medicare patients are increasingly paying Part D fees with no hard cap.
“With the high cost of drugs today, that 5% can represent a third or more of a patient’s Social Security check,” said Brian Connell, director of federal affairs for the Leukemia & Lymphoma Society.
This has forced some older Americans to continue working, rather than retire and get Medicare, because their employer plans cover more of their drug costs. This way, they can also continue to receive financial assistance directly from drug manufacturers to pay for costs not covered by their private plan, which is not allowed by Medicare.
“It’s a little crazy“
All of this has caused financial and emotional turmoil in people facing life-threatening illness.
Marilyn Rose, who was diagnosed with chronic myelogenous leukemia three years ago, until recently paid nothing out of pocket for her cancer drug, Sprycel, which has a list price of $ 176,500 per year. This is because Bristol Myers Squibb, the manufacturer, has paid its insurance deductible and co-pay for the drug.
But the artist and freelance designer, who lives in West Caldwell, NJ, just turned 65 and went on Medicare. The Part D plan offering the best deal on Sprycel charges more than $ 10,000 per year in coinsurance for the drug.
Rose asked her oncologist if she could switch to another drug, Gleevec, for which she would only pay $ 445 a year. But she ultimately decided to stick with Sprycel, which her doctor says is a longer course of treatment. She hopes to qualify for financial aid from a foundation to cover coinsurance but won’t know until January.
“It’s just weird that you have to make a decision about your treatment based on your finances rather than the right medication for you,” she says. “I have always believed that when I get to Medicare age, I will be able to breathe a sigh of relief. It’s kinda crazy.
Given the shock of the sticker, many other patients choose not to fill a necessary prescription or delay its execution. Nearly half of patients who face a price of $ 2,000 or more for an anticancer drug leave the pharmacy without it, according to a 2017 study. Less than half of Medicare patients with blood cancer received treatment within 90 days of their diagnosis, according to a 2019 study commissioned by the Leukemia & Lymphoma Society.
“If I wasn’t doing very well in finding free drugs and getting co-payment foundations to work with us, my patients wouldn’t get the drug, which is horrible,” said Dr. Barbara McAneny, oncologist at Albuquerque, NM, and past president of the American Medical Association. “The patients would just say, ‘I can’t afford it. I’m just going to die. “
High drug prices and gaps in coverage have forced many patients to rely on complicated financial aid programs offered by drug companies and foundations. Under federal rules, foundations can help Medicare patients as long as they pay for drugs made by all manufacturers, not just the company that funds the foundation.
But Daniel Klein, CEO of the PAN Foundation, which provides co-payment assistance to more than 100,000 people a year, said there was more patients in need that her foundation and others like her can help.
“If you’re a normal consumer, you don’t know much about it until you get sick and suddenly find out you can’t afford your meds,” he said. Patients are lucky, he added, if their doctor knows how to navigate the labyrinth of charity.
Yet many do not. Daniel Sherman, who trains hospital staff to deal with patients’ financial problems, estimates that less than 5% of US cancer centers have experts on their staff to help patients who have difficulty paying for their care.
Sharon Clark, who is struggling to cover her cancer medications, works with the Leukemia & Lymphoma Society to counsel other patients on how to access support resources. “People tell me they haven’t started treatment because they don’t have the money to pay,” she says. “No one in this country should have to choose between accommodation, food or medicine. It should never be that way, ever.
This article is part of a series on impact of high prescription drug costs on consumers made possible through the 2020 West Health and Families USA Media Fellowship.
KHN (Kaiser Health News) is a non-profit news service covering health issues. This is an independent editorial program of KFF (Kaiser Family Foundation) which is not affiliated with Kaiser Permanente.
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